What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

Huntington’s Disease Society of America Announces the Launch of a Three-Part Online Accredited Continuing Education Course for Community Based Primary Care Providers, Neurologists and Psychiatrists

HDSA, in partnership with the University of Alabama Birmingham and Medscape, is pleased to announce the launch of a three part online accredited continuing education course for community based primary care providers, neurologists and psychiatrists. Each segment will focus on a different aspect of HD with a goal to educate community based healthcare providers with the basics they need to effectively diagnosis and treat a person with HD. A posttest measures competency in the subject after each segment.

An introduction by Dr. Victor Sung premiered in tandem with Segment 1: Curbside Consult on October 31. The video introduction takes viewers through the objectives of the course and can be found on the Collection page for the online activity at: https://www.medscape.org/viewcollection/34265.

Curbside Consult features a discussion between HDSA Center of Excellence Directors Drs. Victor Sung (UAB) and Erin Furr Stimming (UT-Houston) about diagnosis and treatment options (both pharmacologic and non-pharmacologic) for HD. The link to this activity can be found by going to: https://www.medscape.org/viewarticle/884808.

Segment 2: First Response will include several HDSA Center of Excellence Directors, led by Dr. Sandra Kostyk (OSU), in a lively discussion centering on the use of a multidisciplinary team approach to care. Drs. Madaline Harrison (UVA), Daniel Claassen (Vanderbilt), Valerie Suski (UPittsburgh) and Claudia Testa (VCU) are featured. This segment will premier later this month and will be announced by HDSA when it is available.

A third segment, with HDSA Center of Excellence Directors, Drs. Sam Frank (BI Deaconess), Danny Bega (Northwestern) and Jee Bang (Johns Hopkins) will premier in December and will be posted by HDSA as soon as it goes live.

This accredited continuing education course is made possible through an unrestricted educational grant from Teva and will appear on the Medscape site through 2018. HD families are encouraged to share information about this course with primary care providers, neurologists and psychiatrists in their communities.

HDSA is proud to be a partner with UAB and Medscape and to have the opportunity to feature so many of our outstanding HDSA Center of Excellence Directors as part of the program. Please contact Deb Lovecky (Dlovecky@hdsa.org), Director of Educational Programs, should you have any questions.